January 10th, 2016

The uncertainties and questions surrounding the end of cancer treatment feel unsatisfying and cause confusion. Several times this past year, when I still had surgeries and more rounds of Chemo ahead, people assumed I was completely finished with treatment and totally cancer-free simply because my hair had begun to grow back. Honestly it seemed at times like others were downright obsessed with my hair, but that's another topic for another time. It was interesting though to see how people often thought of cancer as something that either is being treated or has been cured, as if those were the only two possible options.

It seems--in American culture especially--that we like to have two simple options. Things are either true or false, good or bad, or some other simple dichotomy. We often see black and white when a full spectrum of colors lies in between, and we fail to appreciate ranges of possibilities like we should. I could go on and on about this and I likely will sometime later, but for now I'll limit this to how people seem to view cancer treatment. I have had a hard time explaining to others that I don't know If I am done or not with treatment. I've barely even tried to explain to others that my oncologists would have preferred to keep me on chemo another year or more, but that they ultimately left that decision up to me, and I chose not to bother with maintenance chemo. Cancer treatment is a complicated and messy process. For many people, such as me, there is no single definite end point.

I finished my planned course of treatment back in October, with my last day of radiation therapy. Since then I've had scans, an ultrasound, and an abdominal drain installed and then removed. I still take a handful of pills daily, to combat the toll treatment has taken on my immune system. Who knows what else I may have done in the future, or if it will really be considered treatment or not. In large part, the scans I will have in early February will determine what comes next. And I am certainly not alone in having this type of experience. A friend of mine had surgery just this past week, to replace the titanium femur he had received last year. The first prosthetic femur worked itself loose somehow, so needless to say this was a very necessary surgery. While I wouldn't exactly consider his surgery a part of 'cancer treatment' itself, it is only because he had osteosarcoma in his leg that most of his femur had to be replaced with a titanium bone instead. This was, then, in many ways a part of his cancer treatment, even though he has been declared to have No Evidence of Disease. For many of us, cancer treatment becomes very uncertain once the planned course of treatment ends. Achieving NED can happen multiple times, with recurrences interrupting everything and wreaking havoc on the comfortable categories of cancer patient and cancer survivor. When dealing with aggressive cancers, it is nearly impossible to find an exact end point to treatment. Treatment just sort of slowly ends without any fanfare.

Given what I had seen of cancer prior to 2015, I would never have dreamed that the waters would be so murky at the end of planned treatment. Videos of patients dancing on their last day of chemo or ringing a bell to declare themselves cured are far more palatable and therefore popular than the unsatisfying kind of end to treatment I had. Add to that the fact that the weeks immediately after my last day of radiation were far worse than the weeks leading up to them, and it's no wonder people don't hear much about this kind of experience with finishing cancer treatment. We like closure. We like to mark the moment when one has moved from being in treatment to being cured. We like simple options, not the complex decisions and uncertainties than many of us with difficult cancers face.

In some ways, I am still getting treatment. As I mentioned above, I take pills daily as a result of my cancer. But I am also not actively receiving any medical care that actually combats cancer. It is a strange, in-between, waiting phase filled with uncertainties. We haven't bothered to make any definite plans for any time after my next scans. Once we have the results, we'll figure out what comes next. It is, to say the least, a rather odd way of living, one that defies attempts to label and place it in one category or the other. I may not be in treatment right now, but cancer still has a lot of sway in my life's course. In the midst of all the uncertainty, it is comforting to remember that God excels at bringing order from chaos.